Psychosocial burden in young patients with primary anti-phospholipid syndrome: An Italian nationwide survey (the AQUEOUS study)

C. B. Chighizola, F. Crisafulli, A. Hoxha, F. Carubbi, M. Bellan, S. Monti, L. Costa, C. Baldi, M. Radin, E. Praino, L. A. Coletto, F. Pregnolato, S. Sciascia, P. P. Sainaghi, E. Bellis, V. Ramoni, L. Quartuccio, A. Alunno, M. Gerosa, L. Andreoli

Research output: Contribution to journalReview articlepeer-review

Abstract

Objective The AQUEOUS (Anti-phospholipid syndrome: A QUEstionnaire for yOUng patientS) study aimed to assess how the diagnosis of primary anti-phospholipid syndrome (PAPS) affects the psychosocial status of young patients. Methods Subjects with PAPS aged 18 45 years were invited to compile an ad hoc designed questionnaire and the Short Form-12 to assess quality of life (QoL). Results Ninety-Two patients (83.7% females) were recruited in 10 Italian centres. Vascular and obstetric manifestations were equally represented. Nearly half of the patients perceived the need for psychological support, 89.2% when considering women after pregnancy complications. Social activities and working efficiency were reduced in APS patients, also intimacy was threatened. In all cases, fatigue appeared to be the main determinant. PAPS affected family planning, due to fears of treatment side-effects, disease hereditariness, inability to care for the newborn child. Fertility appeared to be conserved: The median time to pregnancy was 2 months; assisted reproduction techniques were pursued by 5 women. Our survey documented significantly lower rates of hospitalisation and learning disabilities in 51 children born after APS diagnosis as compared to 48 children born before. PAPS patients displayed lower QoL in physical and, to a greater extent, mental scores compared to the general Italian population. Both components were significantly lower in women and in patients with fatigue. Conclusion The AQUEOUS study assessed for the first time the unmet needs of young PAPS patients, enabling the development of a future "youth-focused" strategy to reduce disease burden.

Original languageEnglish
Pages (from-to)938-946
Number of pages9
JournalClinical and Experimental Rheumatology
Volume39
Issue number5
Publication statusPublished - Sep 2021

Keywords

  • anti-phospholipid syndrome
  • psychosocial burden
  • survey
  • unmet needs
  • young patients

ASJC Scopus subject areas

  • Immunology and Allergy
  • Rheumatology
  • Immunology

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